Monday Wisdom: On Clinical Research and Henrietta Lacks

After becoming a mother at age 20, I (and dare I say even my family) doubted that I would ever finish college and medical school for a single mother was totally out of the question. However, I have worked in the medical field for over 10 years – in mental health, outpatient surgery, and clinical research. My time as a Clinical Research Coordinator strongly resonated with me as I read Rebecca Skloot’s The Immortal Life of Henrietta Lacks.

Oh my goodness. I had planned to write this blog post months ago and the time has constantly dragged because I honestly could not pull myself together. Never, have I read a book that shook me and had me question everything I knew about myself and more importantly my career in healthcare. THAT IS INDEED THE MARK OF A GOOD BOOK!

SOME BACKGROUND:

A few years ago, I interviewed for a Clinical Research Coordinator position at a local hospital. When I was in front of the PI (Primary Investigator), I was told that I was brought in specifically to recruit African-Americans. For one reason or the other, they were having a hard time recruiting African-Americans and the money they would receive to continue to research was contingent upon recruiting more African-American (males specifically).

Now I knew the history of Tuskegee, read all of the issues regarding vulnerable populations research, and just knew of the distrust involved in clinical research. Working in medical trials, the adverse events (side effects) of the drugs could be unbearable and deadly. In one trial I worked on, most of our patients were already deadly and the study drug would, at best, buy the patients another month or two but the potential side effects would make those extra months of life 10,000 leagues past miserable.

So as I sat across from the interviewer who singled me out due to my blackness and ability to recruit blacks. I was flabbergasted! The money was nice and the hospital would bring a certain level of resume credentials but I hurt because I didn’t want to used to lure in black men. No!

As I read the book, I found myself going through all those emotions again and dredging up some new ones. For example, when I read how staff just NEGLECTED to tell Henrietta and her family, what they were doing with her cells, I felt ill. I have been in the icky situation with doctors pushing me to drive up subject numbers and to recruit at all costs and watching if I become to “overly explain-y” or made things sound too horrible when explaining the research project. We had numbers to meet and research to conduct. Reading Skloot’s work did not surprise me because I have worked with many doctors like the John Hopkins doctors. I am saddened that there are still many like them in 2015.

Earlier this year, after a 2 year break from Clinical Research where it literally felt like recovering from a bad breakup, I interviewed for another position. As I walked through the hospital and felt how familiar it would all be, a sadness washed over me. While I know that future generations would benefit from any research finds, I still find that there are some doctors and nurses and medical staff, that are still very much like Henrietta’s. How can I reconcile myself with that?

Skloot’s book changed me because it reenergized my passion for health. While I may not be treating patients, I can teach students how to properly conduct research; I can educate the public on what to look for when approached for a clinical trial or any type of research.

My writing has also been re-energized. I want to find the best ways to tell a good, honest story. Because in the end, the story is what matters.